Dabrafenib and Trametinib

I was on the tablets for 7 months two years ago and had the same side effects. I would also become very very cold and had to wrap up in layers to go out. I didn’t take anything for it as I knew about the side effects and just tried to get through it. I was taken off it after 7 months as I had tumour progression and then started immunotherapy.I am still on immunotherapy and find the minor side effects much easier to handle.  I never had my treatment suspended due to side effects. I hope they become less and I wish you well 

Hi , welcome to the group, I was on Dabrafenib nearly 5 years ago (Tramatenib wasn’t available then except on a trial) I haven’t had the side effects you describe. There have been a few previous posts about needing treatment breaks I put Tramatenib in the search bar and came across this one.

https://community.macmillan.org.uk/cancer_types/melanoma/f/melanoma-forum/193607/targeted-therapy---what-s-it-like?pi8643=1#1423083

I was thinking while you wait for replies you could do a search. 

When the weather is hot I’ve used a thin neck scarf which is filled with gel that you put in water to hydrate the gel and it keeps you cool, it stays cool but not outwardly damp for hours. My friend who had a lot of sweats from breast cancer got a cooling pillow from boots. 

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/hot-flushes-and-sweating

I found the above link with some tips as well, and your doing the right thing by keeping your team informed.

take care

Thank you for your reply, the links you included are very interesting reading. 

 There is so much information on this website it's mind blowing, but that said again very interesting 

Thank you for your reply, immunotherapy was discussed but they decided to try Dab & Tram first. Another side affect i have is sore feet which I find is very strange and have been told to take B6 supplements and moisturising cream. 

Hi I was so relieved to read that you are on the same medication as me! I started three and a half weeks ago. All ok until week 3 when I had increased temperature and Shivery/hot, aching all over. I was told to stop for 2 days and then start again which I did and to take paracetamol. I hate taking any tablets but currently controlling aching with paracetamol every 6 hours. And back to see my oncologist on Friday. I have also had the sore soles of my feet and palms of hands but not constant. Just worried from what you are saying, side effects just continue whereas I was hoping that the body gets used to it after a while!

I will let you know if my oncologist gives me any indication of any way of anything that might help. 

Do let me know how you get on too. 
regards

Hi thank you for your reply and that would be great to see what you're oncologist says. I've had to stop my course of treatment 3 times now all around the same time 21-24 days in. This last time they gave me steroids to try and stop the rigors and sweats but unfortunately they haven't worked.

Looks like I will have to ring the hospital again in the morning - I think we're on 1st name terms lol

Hi there

injust had to post as I started the dab tram combo 2 1/2 months ago now and am getting to grips with it all. 

I too have sore soles on my feet so am somewhat relieved that you have mentioned it too - I do keep them moisturised and take b12 - is that the same?!

i also haD horrific temperatures the first month despite taking paracetamol so was advised to take a break of 24 hours which helped reset me and I’ve not had that problem since thankfully.

i do get occasional headaches which aren’t pleasant and sweats but what with a potential menopause and extreme hot weather who knows!!

ive got a body and head scan mid July which will be the first since the op so am nervous to see what’s happening in my body. 

ive also developed a bit of Lymphoedema but the clinics aren’t open yet so am a bit worried about that too....

Hi Tinktoo

I am taking B6 for my feet not B12 I think these will be different. That being said they have now stopped my prescription saying they don't think they are working and I will be just as well getting some multi vitamins. I think I'll get some from Holland and Barrett.

I'm pleased your sweats have gone away I have again had to pause my treatment of Dab but this time have been asked to carry on with the Tram. I have also been asked to up the dosage of my steroids to 10mg a day from 5.

Good luck with your scan, positive thoughts

Hi Helensug

Just thought I would catch up with you to see how you're meeting went last week with your oncologist, hope everything went OK? 

Hi

So sorry so slow to respond to this. I have been having a torrid time. My oncologist has put me on a slightly lower dose of both Dabrafenib and Tramstenib. I have only been taking for 4 days as hadn’t finished the others and these weren’t ready immediately. Had a break for a couple of days but horrible red spots on legs and arms. Do they disappear eventually I wonder? Then also now bouts of extreme cold and going very pale! Swollen wrists and feet!! 
on the up all bloods and ECG ok!! 
I think I am feeling a bit better today but feeling very low and ending up resting on bed trying to get warm. 
I wonder if this is the same for others on this medication? 
I shouldn’t complain as the operation scar has healed beautifully apart from the seroma - seems the least of my worries now!! 

it would be good to know if anyone else has gone through this too? 
xx